#Hypermobile

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Last day of the cleanse. Thank goodness! I get to start up my new naturopathic treatment tomorrow. I'll keep you all updated on how it goes in case you're interested in more than symptom relief. This could potentially reset my flare up button and reduce my #chronicfatigue and other issues. I'd rather just be #hypermobile than struggling with progressive #chronicillness and #autoimmunedisease . I plan to run a 5k in December...and crush it. #zebrastrong #zebrawarrior #zebraproblems #mastcell #mastcellactivationsyndrome #mastcellactivationdisorder #mcad #hypermobileeds #heds
Got this little gizmo (on doctor's suggestion) to work on building up forearm/wrist/hand strength, to help with the wrist pain and inflammation and stiffness and little bit of carpal tunnel/nerve pain that I get from the instability in my wrists. Bonus it's also a tool climbers use to build up strength. I haven't had it too long, but I've been pretty consistent - I just carry it in my bag everywhere because it's handy (haha) and small. So when I'm a passenger in the car or sitting in stopped traffic I can use it (please note I'm parked in the pictures), or at my desk, or waiting in line, etc. I try to do it often but don't do it for too long at a time. . . . . . . #wristpain #wristinstability #jointpain #jointinstability #tendonitis #chronictendonitis #chronicinflammation #chronicpain #invisiblepain #hypermobilityspectrumdisorders #hypermobility #bendy #hypermobile #hsd #zebrastrong #spoonie #athleteswithchronicpain #climbers_of_instagram #climbers #rockclimber #boulderer
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Sitting outside earlier I noticed everytime people got within eyesight I would automatically hurriedly stop stimming & hide my sponge...I'd feel ashamed, then annoyed at myself for feeling ashamed!! This is the stim I do most, probably 70% of the time I'm awake. I do this when I'm anxious, tired, in need of comfort, bored, upset, concentrating etc etc. If I forget my sponge I feel extremely anxious; if I need to sponge but can't because there are people around, I feel very trapped & panicked. It's the one I'm most aware/ashamed of, because it's an easy one for people to see/notice. Their reactions make me feel like an oddball 😳 It's such a little thing but people are such dicks about it πŸ™„ #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder #ilovemyboyfriend
Well my neck & shoulders feel significantly better for that walk, but my headache is a little worse & I feel extremely nauseous...I think that's still an improvement though? Extra codeine should help with that at least. And it was a very pretty walk work some good training with Finley, plus we had a nice phonecall with our friend who's coming up this weekend. Now to seriously relax 😌 #wheelchairphotography #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #hypermobile #sicknotweak #wheelchair #dysautonomia #ASD #aspergers #photography #amateurphotography #amateurphotographer #nature #naturephotography #countryside
My migraine has improved slightly but I can't get my neck/shoulders right, & their pain is travelling to my head πŸ˜₯ I'm gonna head out on a dog walk, in the hope that it'll reset them (dog walks in my chair are one of the only things that can help my neck/shoulder pain once it really gets going, painkillers don't touch it). It could be a disaster & make my #migraine 10x worse, but I guess we'll just have to wait & see πŸ˜… #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder #ilovemyboyfriend
So this time last year I was getting ready for my hen weekend (bachelorette for my US friends). I am a HUGE Madonna fan and my sister thought it would be hilarious to dress me up as 80s Madge for the weekend. I think it’s possibly the one time I have every worn lipstick and a tutu skirt, but hey, that’s what you do when you’re getting married, right?! πŸ™ˆ
Had a huge nap & woke up feeling so much worse 😭 Whyyyy?? Taken some groovy pink codeine & just waiting & praying that they help. Seriously concerned about this weekend now... #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder #migraine #migrainepose
Having some fun with snapchat always brightens my day. My sister in law is coming soon to work on wedding hair styles so I showered, but then my blood pressure skyrocketed... So now I'm in time out lol . . . #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobility #hypextension #hypermobile #zebra #zebrastrong #zebralife #spoonielife #spoonie #chronicillness #chronicpain #chronicillness #chronicpain #spoonie #spoonielife #heds
#migraine 😭 Took a benadryl to try envisage sleep & see if that helps...if I'm not asleep in half an hour I'll take codeine to try ease the pain. Uuugh. Let's just pretend I'm being this out the way before our friend comes up this weekend... #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder
DELICATE SKIN, FULL LIFE "Always being one small stumble away from an ER trip is also hard. But having to be cognizant of your significant limitations at such a young age is the hardest of all." Read Tracy and Grayson's #myEDS story at ehlers-danlos.com/tracyh/ #EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #cEDS
The weather's scorching today so I decided I'd do some washing that needed doing before our friend comes up this weekend - 3 loads & they'll all be dry by the end of today! 🌞 I handled the washer & Lyle rung the clothes out & hung them up, to protect my joints from subluxing...still subluxed a finger joint & my wrist though πŸ˜… Also added the mudguard to my wheelchair so I can do heelwork with Finley - or could if it wasn't so damn hot πŸ˜‚ Now I'm in bed exhausted & nursing sore joints, going to watch Lyle gaming & chill 😊 #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #wheelchair #dysautonomia #potsie #bipolardisorder !
😊 #HappyYogaBody | Day 4: Pigeon. You guys! I took the first picture of this pose without my foot touching my head and I saw the opportunity to create a closed shape so I took another. It was soooo weird to feel the back of my foot on the top of my head!! Haha! This was a first. 😊 β˜€οΈ Happy hosts: @shreeyoga @omniyogagirl @ina.yoga ❀️ Generous sponsors: @liquidoactive @yogisurprise @awakenthepeace @muktabeing @szmalas ❀️ 1. Splits βœ”οΈ 2. Compass βœ”οΈ 3. Wide Legged Forward Fold βœ”οΈ 4. Pigeon βœ”οΈ 5. Epk 2 6. Thunderbolt 7. Wheel β˜€οΈ #pigeonpose #pigeon #yogapose #asana #EkaPadaRajakapotasana #flexibleback #hypermobile #yogapractice #happy #happyyogi #dailyyoga #dailyyogapractice #yoga #yogisofig #backbend #openheart
Today I'm hurting. I'm going out and I'm hurting. I'm struggling to see and I'm going out. Life. - #disabled #fibro #fibromyalgia #hypermobilityspectrumdisorder #hypermobile #hypermobility #migraine #fat #smallfat #queer #nb #nonbinary #strangerthings #glasses
Practice makes perfect. I am still not where I want to be with make up and I practice weekly with colours and techniques. I sometimes look at others and feel saddened that I’m still not at their level but when I look back at the last 4 years when I started getting putting effort into my make up, I’ve come leaps and bounds. Having Hypermobile EDS means I get tired and my arms hurt after doing my hair or make up but the last few years I have pushed through and even though my hands shake, I have managed to adapt my techniques as best I can. I remember when I first started serious about make up, I had just been paid and I went to @maccosmetics and spent over Β£100 on make up. I bought a few different things and tried them all and used them to practice while watching @youtube videos and the rest is history ✨ I love artists such as @lipsticknick @mannymua733 and @jaclynhill and love that they take the time to make videos to help people and give advice and I’m glad that youtube gives people access to learn things they enjoy doing. I’m still not where I want to me, but I’m working hard to learn and to grow✨ β€’ β€’ β€’ #lblogger #lifestyleblogger #beautyblogger #blogger #bblogger #bbloggeruk #plussizeblogger #plussizefashion #psblogger #girlswithtattoos #lbloggeruk #tus #bloggersuk #makeupprogress #progressionnotperfection #youtube #beautylover #bloggeruk #makeupaddict #maccosmetics #jeffreestarcosmetics @ehlersdanlosuk #heds #hypermobile #eds
The skateboard wheels for my chair arrived today, along with the mudguard...unfortunately the wheels were a no-go 😞 They looked EPIC & wheeled great, but the issue was that due to the smaller size, the back of my chair made me sit more upright. This hugely fucked with my POTS & I was having constant #seizures 😭 If the chair back was adjustable it would've been fine, but unfortunately it's not...booo! Oh well. The heat is back today so it's a day of staying at home & doing nothing, at least until late evening. Another boo! #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #wheelchair #dysautonomia #potsie #bipolardisorder
We got some bad news Monday. We are still trying to figure out exactly what we are going to do. I’ll update all y’all when I know what’s up. It’s been quite the week, but I got this. We’ll get through this. In the meantime, send love and good vibes. #challenge #riseup #igotthis #keepmovingforward #justkeepswimming #bornthisway #invisibleillness #progress #healing #chronicillness #medicine #dysautonomia #gastroparesis #HSD #hypermobile #california #queer #girlswhosmokeweed #weedismedicine #legalize #pot #ganja #ganjagirl #mmj #marijuana #medicalmarijuana #stoner #high #cannabis #cannabiscommunity
Pretty sure today was the first time in 6+ months that I've managed two dog walks in one day!! The first was pretty big (45mins? with a ton of #seizures + symptoms) & the second was teeny (15mins), but I'm still super happy! Yay for the end of the #heatwave & my wheelchair making this possible πŸ˜‚ Gonna relax, watch Lyle play some Resident Evil, then sleep πŸ™‚ Also I really like this photo I took walking through our village in the dark haha, the street lamp at the end of the bridge is bust & it looked eerily beautiful! #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #wheelchair #dysautonomia #potsie #bipolardisorder #photography #amateurphotography #amateurphotographer #blackandwhitephotography #urbex
β€œIt takes unimaginable strength to continually endure, persist and overcome. People with disabilities aren’t weak. They are the strongest human beings you will ever meet” Unknown. What makes you #zebrastrong ?
Aaagh it was so nice before my big overreaction πŸ˜₯ 🌊 . Knowing that I have autism & that's why I have so many issues with strangers, interaction, & have meltdowns is hugely helpful...I hated myself for so long & battled so much guilt. Now it makes sense, & the guilt is already less...in time I hope to feel even less guilt, & we'll have a better way to handle break downs. . I'm still not sure if I'll be trying to get an official ASD diagnosis (if it's even an option in my area)...basically everything is stacked against me: I'm an adult, I have MH diagnoses, I'm AFAB. I'm gonna wait to see how I feel after we've sorted all the physical health stuff, but if I decide not I already feel much better thanks to various websites I've studied. They're super validating, especially Life On The Spectrum πŸ™‚ #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder
Goodish walk (lots of #seizures & HR fuckery!), but it turned sour at the end 😞 Lyle goofed pushing my chair, resulting in a front wheel going over Finley's toe (Fin was fine), & I had a big meltdown. It wasn't even his fault, but πŸ˜₯ I was screaming "FUCK OFF" (when I'm in a meltdown the only thing that will help is space, do not try & interact with me. Lyle struggles to understand this 😩) Finally Lyle took Finley off to train & I was supposed to wait for him to get back to me...but I went ahead, calmed down, & filmed a little. 2nd & 3rd video there's a bit in the village where I can't get up the curb, so have to go on the road until there's a wheelchair accessible bit. Kinda terrifying #wheelchairaccessibility πŸ™„ After 5mins wheeling I sat about & waited for Lyle and Finley to catch up, we made up, then went home. Idk how he puts up with me πŸ˜₯ Oh the last video, the big lump in the pavement usually makes it so I can't get up it whatsoever - I tilt left cos of the bump & my right wheel spins on air. I tried yet again today & made it!! πŸ˜ƒ #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder
Photo throwback to summer last year . Had the day off of work 😊 so I have spent the day resting, doing errands and doing som me self care πŸ™‚ tomorrow I am back at work. My pain is still unmanaged and as well as my stomach issues seem to be glaring at the moment πŸ€¦πŸ½β€β™€οΈ hopefully have a better day tomorrow 🀞🏼 hope you all are well, love and spoons πŸ₯„ . . . . . . #chronicpain #chronicillness #spoonie #spoonielife #spooniewarrior #asthma #sciatica #ibs #depression #quotes #nurishnotpunish #fibromyalgia #fibromyalgiaawareness #fibro #fibrowarriors #fibrofog #hypermobile #hypermobility #me #cfs #myalgicencephalomyelitis #chronicfatiguesyndrome #invisibleillness #mentalillness #fibromyalgia #fibro #chronicfatigue #spoonieproblems #spooniestrong #spooniesunite
VASCULAR EDS: MAKING EACH DAY COUNT "For however long God gives me on this earth; I would like to make each day count. If I educate just one person a day or even a week, when my time here is over, my family will be able to say she made a difference in at least one person’s life." Read Crystal's #myEDS story at ehlers-danlos.com/crystaln #EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #vEDS
*** NEW *** Baby Massage and Baby Yoga private sessions tailored for #hypermobile babies. #northlondonyoga #northlondonmassage
Twenty years old and I now have a walking stick. Some of you may know, others may not, but I have a condition called Joint Hyper Mobility Syndrome. Basically, my joints move beyond their expected range. While this means I'm more flexible than an average person, it also causes pain in my hips, knees, jaw, hands and back (plus some other places). This stick means that I can now move around when the pain flares up and not have to sit down until it goes (which can sometimes take a few days to full disappear). Plus, if someone annoys me I can hit them with it :D #hypermobilitysyndrome #joint #jointpain #hypermobility #walkingstick #stick #flexible #hypermobile
My new neck pillow arrived today! I've been wanting to buy one since benefit packpayment came through, but what with buying my awesome wheelchair last month & spending Β£360 on vet bills unexpectedly, it wasn't a priority!! It's way firmer than I was expecting, but the shape feels great on my neck when I lay down. I bought it thinking it was memory foam, but it's actually more like the firmness of a car headrest - unless it gets softer? Idk how it will be to sleep on, we'll see πŸ˜‰ My last 'memory foam' pillow *really* helped with my chronic neck pain & migraines, but it had the worst memory ever; within a month it was half the thickness, & 6 months later it's soooo flat that I sleep on it folded into 1/4s πŸ˜‚ #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder
Our friend who's staying this weekend sent this & it had me laughing hysterically πŸ˜‚ I did stab him once with a knife when I was super psychotic, & he's never forgotten hahaha. Plan for this weekend is pub crawl on the first day (I'll have one drink in one of them, because I'm edgy af πŸ˜‚); big dog walk, fly a kite, & eat at a pub the 2nd day; and a really cool nature museum on the 3rd. I think that's a good balance of doing as much as I can without doing so much that I'll die the rest of the day/the days following. I get super anxious even with fun things like this & literally have to have everything planned, I tend to write out lists with the order on which we'll do things as its easier for me to wrap my head around. #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #wheelchair #dysautonomia #potsie #bipolardisorder #bipolar #schizophrenia #schizoaffectivedisorder
My body only slept for 7hrs, for no reason. I'm super irritated because after the big walk yesterday I feel incredibly exhausted. I'm so tired that I keep staring off into space, lost to exhaustion. I had the bathroom door shut to keep the dogs out, & Lyle kept knocking on it because I was just in there silent & barely responsive πŸ˜… This is another thing I wish ableds understood - that even when spoonies are able to do something, the fallout is huge. The walk yesterday afternoon was about an hour (factoring in many, many rests, seizures & syncope), for the rest of the day I was in bed basically not moving, yet still today I'm paying for it. This is why I'm worried about having a friend to stay this weekend, not only for how I'll feel after his visit, but also because once we've done something in a day, he'll find itp hard to understand that I need quiet & rest now, to recover. #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder
I had such an amazing day. I got my walker! I'm trying to think of a name for her, I'm leaning towards Edna. She is amazing, I cannot believe that I found this awesome of a walker on Craigslist. I just can't believe it. The previous owner really never used it, there was still plastic covering on the wheels. There was a price tag still on it, and let me tell you I paid 1/3 of the retail price. So amazing. Also, I went to target and got the storage things I wanted and there was a sale I didn't know was happening because it was a today only surprise sale on the things I was buying! I also went to a thrift store to find a sheet or some shirts for the backing of a quilt I'm making, and I found a pretty blue 200 thread count 100% cotton sheet. I used Edna around the store and omg I had no idea how much pressure is on my lower back when I walked until I used her. I could sit when I needed to, I leaned on her. I even sat while in line and my boyfriend pulled me alongπŸ˜‚(so I wouldn't have to get up, sit, get up, sit. It was so nice) Then we met up with friends and went bowling (I watched from the comfort of Edna) and then went to his house and just hung out for a bit. I am definitely in pain. But I made it through the day! And in way less pain I would've been in if I hadn't had Edna. It helped so much with keeping my heart rate steady, I'd start to get sweaty and fevery feeling and I was able to just sit down! (Edna is an ok name, but idk, maybe Pam? Ethel? Any suggestions?) #mobilityaid #walker #hypermobility #hypermobile #autoimmunedisease #chronicillness #fatigue #spoonie #spoonielife #excited #bestdayever
✨As a person with hypermobile knees, elbows and shoulders, I know how injury prone they can be. ✨ With knees, if you hyperextend them, especially under load significantly more wear and tear is created on the structures at the front of the knee, such as the meniscus and cartilage. At the back of the knee the ligaments which help stabilise the knee potentially become over stretched and can be torn easily. ✨ Other issues not so obvious is the hyperextended knees cause the pelvis to go into an anterior tilt, putting more pressure on the lumbar spine. ✨ So where possible try to not lock back your knees, especially if you are a bendy like me😊 It helps to strengthen the hamstring, calves and glutes which assist in maintaining good leg alignment. ✨ . . #rangespilates #healthtips #kneepain #knee #knees #painfree #hypermobility #hypermobile #movementtherapy #move #stability #smartexercise #intelligentexercise #intellientmovement #healthybody #arthritis #kneearthritis #acl #backpain
We plastikoted our bench because we had two leftover cans (it's pet friendly so we spray wooden rodent levels with it to protect them from pee!), we kept forgetting to buy varnish, so πŸ˜‚ As plastikote is waterproof we've decided it will work just as well...& having a red & glittery silver bench is pretty fricking awesome πŸ˜…πŸ˜ We've played a lot of Resident Evil 7 today & it's been so much fun; this is really my first time properly watching someone play it, as before my #seizures completely ruined it (didn't have a clue I had POTS then, so my fucked up heart rate/blood pressure not only triggered seizures but also made me incredibly photosensitive...basically all games screwed with me hugely πŸ˜…). Whereas now I know not to sit up/lean forwards during games, & I can enjoy them much more πŸ™‚ #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #wheelchair #dysautonomia #potsie #bipolardisorder
#TEAMBOOGIE πŸ‘πŸ‘πŸ‘πŸ‘
Come and join me on Friday at 11.30am EDT/4.30pm UK for a Facebook and Instagram live. I have been making a note of all your questions and will answer any you have live about my gym routine, diet, vitamins, how EDS affects me, life as the International Executive Director of @ehlers.danlos and how I cope with travel, and everything in between!! I look forward to speaking to those who can join on Friday!
#idiots of the world! First pic, the car is obviously blocking the pavement - you couldn't fit a bike through that gap member mind a wheelchair #casualableism 😑 Awful road to have to go on too as cars seriously speed round that blind corner πŸ™„ And 2nd, this road has no pavement, and although there's a wide footpath behind hedges to the left, an arsehole farmer has chained both gates shut so it's inaccessible. We're on the road, tucking right in everytime a car comes from behind, & the car in the photo sat behind us for 5 minutes not moving, before sloooowly overtaking & glaring as he passed. What a dick πŸ˜… #ableist #ableism #wheelchairaccessibility #wheelchairinaccessibility #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder #dogwalk
I love that first photo!! 😍 2nd pic was me absolutely dying after climbing a short but step hill; I took 4 rests going up but my body was on the danger zone. I collapsed into my chair barely being able to breathe & all I could see was visual auras; apparently I tearfully said to Lyle "tell me I'm okay" then had a really big seizure πŸ˜‚ This was one of our biggest walks in a long time, & although it was a struggle it was lovely too! So glad the heat has fucked off momentarily πŸ˜† #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder #puppy #Labrador #assistancedog #dogsofinstagram
This is the reverse namaskar sign, its a common sign you may have Ehlers Danlos Syndrome (or one of tge related HSD/connective tissue disorder disorders). #jhs #jointhypermobility #hEDS #EDS #HSD #ehlersdanlossyndrome #ehlersdanlos #raredisease #chronicillness #chronicpain #pots #cci #invisibleillnessawareness #mcas #compressionsocks #compressionstockings #reversenamaskar #hypermobility #hypermobile
πŸ’‹πŸ’‹πŸ’‹πŸ’‹πŸ’‹πŸ™πŸ»πŸ˜Š #kisses #tattooedyogis #pricklypearmalas #playstation #clocktower3 #hypermobile
I wish #liveportraitmaker had more short/typically masc hairstyles...I wanted to try style my dream hair as I wait mooonths for it to grow, but it's hard when there are only like 2 short hair styles πŸ˜‚ This isn't bad though. I CANNOT WAIT until my hair grows longer 😊 Aaagh my new cap off Wish just arrived & holy shit 😍 Dragons, birds, & a colour explosion 😍 Also there's gonna be a hosepipe ban starting August, & we just got a text from United Utility's saying we're exempt as a priority disabled customer...finally, a #crippleperk πŸ˜‚ #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder #heatwave
It's another cool sun-free day here...aaagh I'm so happy!! As long as it doesn't give me a migraine πŸ˜‚ Also I had a shower already today, smashing it haha! And we finally sorted out my disabled person's rail pass yaaay 😊 It should be here in 4-6 days & gets me & a friend/carer 30% off both our tickets...so that'll come in really handy now I can do a little more in my wheelchair 😊 #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder
Genetic testing, something every EDS'er has needed at one, or multiple times, in their life! πŸ”¬ In a time where we have the ability to read a genetic report and tweak habits to optimize our quality of life, why not? πŸ”¬ $200 can seem like a lot to pay for something that should be covered by our "health care" providers, but since it is not, prime day has it half for the next 24 hours or so, affiliate link in bio. You cannot get the prime day deal unless you look it up in your amazon app, and purchase direct, I just wanted to link in case someone had a hard time finding it.πŸ’š πŸ”¬ While the is plenty of information I'm not necessarily interested in, it, I am very interested in the "40+ carrier status reports" that go over everything from SjΓΆrgen-Larsson syndrome, familial dystautonomia, fructose intolerance and cystic fibrosis!! All common comorbidities, and/or issues associated with #Ehlers -Danlossyndrome. Swipe through to see the other genetic health risk factors, and wellness reports that come included in addition to an ancestry report. πŸ”¬ Has anyone has this panel performed, or have you been waiting for a deal to have this done? πŸ”¬ Do you feel it has benefited your health care, self care and or improved your quality of life in any way? Share below --- πŸ‘‡πŸ½πŸ‘‡πŸ½πŸ‘‡πŸ½
Purchases I have on the way & am excited about!! Skateboard wheels for the front of my chair (please god let them work because 😍) & a fidget/#stimtoy ...it looks fun, I like that it's legit interactive. For Β£1.99 I couldn't refuse πŸ˜ƒ I'm hoping my wheels will arrive in a few days, & I'll have a little chance to test them out before our friend comes to stay for a few days next Sunday! #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #autism #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder
Okay so...the day is gone?! I needed a nap at like 5pm & woke up after midnight?! πŸ˜‚ Usually Lyle would wake me up, but when I was going to sleep I had a #migraine so he wanted me to get as much sleep as possible. It was another 'weather change' migraine; the 3rd day it's been cool/rainy in the last week, & I've had a migraine each of the days πŸ™„ I woke up feeling dreadful: headache, neck & shoulder pain, super dehydrated, & very hungry...well yeah body it was supposed to be a 1hr nap not a 7hr sleep!! πŸ˜† #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt + #wheelchair #dysautonomia #potsie #bipolardisorder
Yet another physical therapist shocked by my hypermobility! πŸ˜‚ She could also see my shoulders sitting out of the socket when I was just sitting there talking with her, and she didn't have to check the stability by pressing on them because I subluxed both sitting still to show her, lol. She taped me up on both arms using some kind of tape, but I don't remember the exact name. It wasn't kinesiotape because she said with HOW hypermobile I was, it wouldn't do anything because it stretches. So she said they also call this "subluxation tape" and it has more resistance. She also mentioned a sully brace, but my problem is that the instability is in BOTH shoulders and not just one. Most braces are designed for one shoulder stabilization. πŸ˜• But she also used some special skin protectant before she used the softer tape on top of the final special tape, since I have really sensitive skin. So hopefully it won't cause any irritation! It seems to be helping a bit as far as keeping them slightly more in place, and it certainly limits my mobility. I think the weirdest part for me is that I feel like I can barely move my arms, but actually, this is how much NORMAL people can move their arms! πŸ˜‚ She asked if I had considered the possibility of EDS, and I explained that I went to a geneticist for it, but that he said I was only a 1/9 on the Beighton (hypermobility) scale. Her jaw dropped because she said that isn't possible and that I was at least a 7/9 if not higher based on her examination. So she did confirm my suspicion that the way he performed the evaluation was incorrect, shockingly. He tried to manipulate me as opposed to letting me do things. So for the thumb to wrist test, he pushed against my thumb, and as soon as he met slight resistance, he stopped and said my thumbs don't touch my wrists (both easily touch). My knees can rest on the table while you lift my feet, palms can touch the floor (despite my lumbar fusion), and my elbows don't hyperextend downward, but PT said they go WAY outward (excessive carrier's elbow). So maybe I DO have EDS? Can they just find the hypermobility gene(s) already? Lol.
A TRIBUTE TO GRACE "In some ways, the race was a metaphor for how determined Grace is in life. No matter what is thrown at herβ€”rain, sleet, snow, or EDSβ€”she gets through it with a spirit and outlook that is unique to her." Read Amanda's #myEDS story at ehlers-danlos.com/amanda #EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #running #vEDS
Today my pain has Been really bad. I have a PT this morning, in which I almost fainted. All day my whole body had been feeling like it’s in a massive cramp, all my muscles and joint feel horrible. On a more positive my mum and I took the dog to the beach which was loverly, tomorrow I am back to work, In really enjoying it and hope to be able to cope with this week as I am going in to a flare πŸ€¦πŸ½β€β™€οΈπŸ˜­ . . . . . . #chronicpain #chronicillness #spoonie #spoonielife #spooniewarrior #asthma #sciatica #ibs #depression #quotes #nurishnotpunish #fibromyalgia #fibromyalgiaawareness #fibro #fibrowarriors #fibrofog #hypermobile #hypermobility #me #cfs #myalgicencephalomyelitis #chronicfatiguesyndrome #invisibleillness #mentalillness #fibromyalgia #fibro #chronicfatigue #spoonieproblems #spooniestrong #spooniesunite
Like mother like daughter! 🀣 #hypermobile #bendyhands #weirdthumbs #thanksdad
The sound sometimes made during a #chiropractic #adjustment is not your #spine "cracking" or "popping" like most people think. That sound is created by gas (in this case, nitrogen) rushing to fill in the partial vacuum created when the joints are slightly separated (just like when a champagne bottle cork is "popped"). The jammed/fixated area should be adjusted by a chiropractor so the other parts of the spine will not be #hypermobile and noisy. When you "crack" your back you may be temporarily relieving tension but do you notice that it keeps coming back? That's because you're not adjusting yourself and the cause hasn't been addressed. Anyone who makes a habit of "popping" or "cracking" any part of their body should have their spine checked. #GoodForYourLife #Chiropractic
Continuing the steampunk theme, this time with the lovely @ec.photography β–ͺ️ β–ͺ️ β–ͺ️ β–ͺ️ β–ͺ️ Modeling has really improved my self esteem, confidence in social situations, and made me realise I'm not actually a worthless person,like my mental health conditions would have me believe. Big shout out to my hypermobile arm for popping up in the shot 😜 Having hypermobility puts a whole new spin on the phrase "pop your hip" ; as mine literally pop out! πŸ˜… Still, I'm enjoying going with the flow and the opportunities that come with meeting new people 😊 #dareisayit #Happy #model #work #invisibleillness #chronicpain #hypermobile #EDS β–ͺ️ β–ͺ️ β–ͺ️ β–ͺ️ β–ͺ️ @strangelittlething__ is my personal account where I post more about my health conditions and life outside of modelling. Would you like to see more posts like this on here? 😘 β–ͺ️ β–ͺ️ β–ͺ️ β–ͺ️ β–ͺ️ #light #photoshooting #beautiful #modelphotography #photosession #goodwork #artgirl #model #photomodel #photomodeling #photos #posing #femalemodel #photogenic #work #camera #pose #photo #poses #fashionmodels #steampunk #modelkarianne
Another timelapse of another storm ☁️ ☁️ ☁️ #MAY22 #nationalparkstrip #optoutside #forceofnature #30before30 #nationalparksgeek #hypermobile #capitolreefnationalpark
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